Impact of the COVID-19 Pandemic on People Living with Rheumatoid Arthritis: Experiences and Preferences in Accessing Healthcare Across Five Countries

This global survey provided insight into how the COVID-19 pandemic impacted people living with RA in terms of their experience with managing their disease, accessing healthcare, and their healthcare preferences.

In this survey, participants reported that the pandemic had a negative impact on their emotional well-being and the control of their RA symptoms. Approximately half of the participants stated that increased anxiety and/or stress made controlling their RA symptoms more difficult. In addition, being hesitant to attend in-person appointments and not being able to get an appointment also caused difficulties. People with RA in Japan were reported to have increased levels of anxiety during the pandemic in comparison to pre-pandemic [20], and a study of people living in Turkey observed increased anxiety levels in people living with RA versus healthy volunteers [21]. Increased stress has been reported by people with RA living in Canada and the US to be commonly related to leaving the house and the associated worry of contracting COVID-19 [14, 22]. Further, results from two patient surveys in the US suggest that the perceived stress experienced by people with RA during the pandemic negatively impacted perceived disease activity [22, 23]. On the other hand, the results of this survey also suggest that lifestyle restrictions imposed during the pandemic, such as fewer social outings, working from home, and less busy schedules, helped people living with RA to control their symptoms, and participants were worried about symptom control in the future once life went back to normal. Consistent with these results, in a study of interview responses from 26 people with RA in Canada, some participants reported that aspects of the pandemic, such as working from home and having more free time, improved their disease management through self-care [14].

Restrictions due to the pandemic gave rise to new ways to manage RA, and this survey suggested that people living with RA increased their reliance on digital support tools such as telemedicine and the use of health apps to monitor disease activity. One potential benefit of virtual appointments is that it may be easier to share links to health apps and patient support group websites. In this survey, participants generally reported a similar level of satisfaction with in-person and virtual appointments, except when considering their doctor’s ability to physically examine their symptoms. High levels of satisfaction with telemedicine delivered during the pandemic have been reported in single-country surveys. In a single-center study of telemedicine consultations in Spain, the level of patient satisfaction was very high (8.62, based on a numeric scale where 10 = fully satisfied), with 80% of patients stating they would repeat the telemedicine consultation and 79% considering them to be useful [15]. In addition, several studies in Europe and South American countries have suggested that telemedicine and hybrid care models do not negatively impact disease activity [18, 24,25,26], and in a survey of 244 Polish people with rheumatologic diseases, 88.5% of participants thought that telemedicine should be available after the pandemic [27]. In a study in the US, patients were satisfied with virtual care and preferred virtual appointments for routine follow-up visits. However, patients preferred in-person appointments when meeting a doctor for the first time or if they had acute symptoms that they wanted to be physically assessed [16]. Nevertheless, in a systematic review of 36 studies of telemedicine in rheumatologic diseases, the majority of studies reported high levels of satisfaction [13].

The pandemic circumstances notwithstanding, the participants in this survey expressed a general preference for in-person versus virtual appointments. Those participants who preferred virtual appointments regardless of the circumstances were more likely to be 18–49 years of age, to have experienced challenges in accessing healthcare, and to be employed. Consistent with these results, a study evaluating the use of an e-health platform in the Netherlands reported that active users tended to be younger than the total population assessed [18].

While it is known that socioeconomic status, variations in access to technology, and native language can impact access to virtual care as well as patient satisfaction, in this study we were unable to specifically address these variables; this was because of the varying demographic characteristics of each market and differences in permissible data collections. In Canada and the US, where self-identification race data were collected in the survey, most participants identified as White. In a recent survey in Canada by the patient support group Arthritis Consumer Experts, people with arthritis who identified as Black, Indigenous, or a person of color, were more likely to experience difficulties accessing and using e-health, and were less likely to be satisfied with e-health compared with people who identified as white [28]. Furthermore, the need for an interpreter between the doctor and patient may negatively impact experiences with virtual care [16]. The International Telecommunication Union reported that in 2021 the internet penetration rates for those countries in our study varied from 80.7% to 92.8%, with Canada having the highest penetration rate and Brazil having the lowest rate [29]. Our survey may have captured a higher-income, younger, and more urban/suburban sample than within the general population, based on factors that are reported to impact internet usage across the world [30]. Further research on the issue of inequity is required to help guide e-health policies.

Strengths of our study include the fact that the survey provides a global viewpoint in comparison to other surveys published to date, which reported local data. However, the survey will have been affected by the country and political decisions related to the pandemic, and adherence to those policies during the survey period (August 25–September 22, 2021), as well as by the presence or absence of a wave of infections at the time of the survey. Stay-at-home measures in the individual countries included in this analysis varied during the study period and throughout the pandemic [31], which may have also influenced the results. In addition, the results within each country may have been impacted by state/province-specific rules. In the US, state telehealth licensing rules, which state a prescriber must be licensed in the state in which a patient resides, were waived by nearly all states during the pandemic, facilitating easier access to virtual care, but the duration of these waivers varied by state [32, 33]. As such, global findings may not be applicable to all countries/states/provinces due to factors such as differences in health systems, access to treatments, cultural variations, vaccination rates, and infection control protocols. All sample surveys and polls, whether or not they use probability sampling, are subject to multiple sources of error that are most often not possible to quantify or estimate, including, but not limited to, coverage error, error associated with nonresponse, error associated with question wording and response options (e.g., adequate participant understanding), accurate recall, and post-survey weighting and adjustments. Finally, no clinical disease activity assessments were performed and so recruitment was based upon self-diagnosis of RA, and participation was limited to those with internet access, which is a potential source of bias in the sample.

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